Saturday, February 7, 2015

I used to think love—deep,
radical, boundless love—was a family thing. Maybe a close friend thing. But I
was wrong.

I started to notice it after Baby Bee was born, before we
had the ASD diagnosis. We had doctor appointments and specialist consults and
hours of crying and screaming and not knowing what was “wrong.” We suddenly had
people at our door with food. People coming to clean the kitchen and take out
the trash. People running to the store to pick up prescriptions. People
stopping by to offer a listening ear. We hardly knew most of them.

Fast forward a few months and we experienced the daily
kindness of receptionists and support workers from private occupational therapy
to public Early Intervention offices. Folks that worked hard to get us
connected to services, said comforting things and never forgot to ask how we,
the parents, were holding up.

Then there was the kind mama from our local Buy-Nothing
group who responded to my desperate plea for an infant swing (for my 25 pound
toddler) because our old one broke and Baby Bee doesn't sleep without it.
(We've tested this theory.) That very day, she drove out to my house, with her
own kids in tow, to drop off a replacement swing. On my porch. While I was at a
doctor appointment with Baby Bee. I wasn't even home to thank her. I didn't
know her.

Did I mention my town raised money to install a swing at our
local park for kids and adults with disabilities? And what the community didn't
raise, the local government covered? I felt the entire community’s support as
they created a space my son and others would someday feel comfortable exploring.

I felt that deep love again when I met up for our first
play-date with a new friend that just moved to town a few weeks back. “You’re a
good mama,” she said as I was silently wondering if I’d done the right thing by
bringing my son to someone’s house and awaiting his inevitable meltdown. She
meant it.

We live in a small town where love abounds. I've come to
expect a high level of support from neighbors, organizations, moms, and yes,
even the local government. We’re incredibly lucky.

Consequently, we’re nervous
to venture beyond our community’s cocoon.

But yesterday, love
showed up silently, in a city that’s not my own. We went to one of those
big box stores to stock up on groceries (and thus reduce our need to venture
out again anytime soon).The
decision to bring Baby Bee grocery shopping is usually more out of necessity
than true choice. We got out of the car.

“Cart. Cart. Cart."

I knew we were in for
it. We approached the red shopping carts stacked up against the building. It
was busy. People rushing. Cars pulling in and out. “Cart! Cart! Cart!” His
chanting increased to a frantic level.

Deep breaths. “Alright Baby Bee, we’re going to put you in
the cart so Mama can get groceries.” I held my breath waiting for what I knew
was coming next. The screaming started; I was grateful we were outside. I wheeled
us over to a less busy area, partly for him and mostly, for me. Something happens when your child gets a
diagnosis or acts differently than other kids. You start to pay more attention
to what people say and do. You start to listen every time some stranger—who is
still developing their own skill set of appropriate social commentary—demonstrates
that they have room to grow.

And it’s always at the grocery store because it’s just about
the only public place you bring your kid anyhow.

I whispered our next steps, hoping it would soothe him.
“Now, I’ll buckle you up so you stay safe in the cart. Here’s the buckle.
Click. Click”

He was yelling now. “It IS loud, isn't it Baby Bee? I hear
lots of people and cars and carts. Listen? Do you hear that? Woosh, woosh.” I did my best imitation of the
electric doors we had to enter sooner or later. “That’s the sound of the doors
opening and shutting. In a moment we are going to go through those doors, and
walk up and down the aisles to get the food we need.”

“LOUD! LOUD! LOUD!” and then suddenly, “Bike. Big. Bike.
Bike. Bike. Bike.” I knew what he was thinking. Our local grocery store has red
carts too—and full-sized bikes around the perimeter as decoration. I guess it’s
a small town thing.

“ The bikes aren't at
this store, Baby Bee.”

“BIKE! BIG BIKE! BIKE!” He was fixated. He’d spend the rest
of our trip intermixing “Bike!” and “Loud!” and “Cart!” If that was all that
happened we’d consider it a success.

But then someone bumped the cart. He was crying now, the
full on meltdown crying that seems to have no end when you’re in the middle of
it. Occasional bursts of “Loud!” and “Ouch!” came through with a fair number of
“No! No! No!’s” thrown in for good
measure.

People were staring and avoiding in turn. Shaking their
heads. As a parent, you wonder if people
will blame your parenting. Your genetics. Your decision to reproduce.

Or the fact that you
went back to work at two months postpartum instead of three.

I digress.

When I looked up, I saw her. A mom with a preschooler
stood to the side watching. I whispered into Baby Bee’s ear to drown out the
sensory chaos. She leaned in to hear what I was saying. She watched the way I
pressed the sides of my hands on either side of his body to provide some deep
pressure and used my body as a shield from the visual stimulation around us.
Her daughter stood, watching us too.

Several minutes later, Baby Bee had calmed and picked up his
“bike, bike, bike” chant again, which I took as a positive sign. I gathered my
courage and faced the ever “wooshing” doors.

She was still there. Not staring. Not rudely prying into our
difficult situation. But standing respectfully off to the side seemingly
observing, educating herself, and maybe rehearsing the conversation she’d have
with her daughter about how everyone has different challenges in life. Her look
was compassionate and encouraging.

And then she caught my eye and smiled at me with a smile
that conveyed it all:

“There’s more of us out here, you know. We’re here if you
need us. If you've got too much going on, we’ll bring you dinner and clean your
kitchen. And I noticed that your kiddo has a lot going on, are you doing okay
yourself? We’ll drop the infant swing or whatever else on your porch, if you
can’t pick it up. I don’t mind at all. Oh, and please, don’t worry, we already
made a donation for accessible play structures at our park—your child is
welcome any time he likes. Remember, you've got allies all over the place, not
just at home.

Tuesday, February 3, 2015

Milestones are a funny thing for babies. Well, for people in general I guess.

It's no secret how a child grows. Everyone knows the sequence of development, give or take a few months. People get excited about the achievement of each new ability. Parents track milestones in baby books. Strangers in the grocery store ask "how old?" and follow it up with a related question or comment about the age-appropriate milestone. Even kids want to know what that other, younger kid in the corner can do.

When you have a child with a developmental delay or disability, however, milestones feel different. They're a blend of happiness if your child meets them (even months or years past their "expected" arrival) and a strange conglomeration of sadness, hope, and mourning, with a hefty dose of "he'll-get-there-when-and-if-he-gets-there,-and-I-don't-really-care-if he-gets-there-anyhow."

It starts off innocently enough. The lady in front of you in line, the librarian who you're pretty sure does story time once a week, your aunt you never see, a friend whose baby is two years ahead of yours...they all want to know what's happening in your baby's life and they innocently assume that your child is a train on the same set of tracks as all the other kids they've known.

"Oh, 3 months old. What a cutie. He must have the best smile when his daddy walks in the door!"

"He's probably rolling over and almost sitting up by now. How exciting!"

"I'm sure he is just crawling everywhere! Hope you've baby proofed. My niece was into EVERYTHING once she started crawling around."

Slowly, the curiosity switches to a gentle assessment of the situation when their innocent assumption proves wrong:

"Really, he isn't trying to "talk"? My little one was babbling ALL. THE. TIME. when he was that age. Especially when we'd go out somewhere."

"He is pointing though, right? That's such a fun stage."

Then the judgment and blame begins to creep in:

"Well, I'm sure he at least says 'Mom'....No? Well, you talk to him so much I guess he doesn't have a chance to get a word in. You do it all for him."

"Hey there, that kid's almost as big as you are! You sure you have to carry him? He can walk can't he?"﻿

"No shoes? I guess he doesn't need any if you're just going to keep him on your back all the time in that contraption [baby carrier]"

"When my babies were little, I put up a baby gate with really sturdy wood posts so they could pull up on it. You know, I think all my kids were able to pull up by 7 months and they were all walking by 10 or 11 months. I'm sure that gate is what helped them learn. Have you tried a wooden gate yet?"

The conversation then draws to a close with an oddly dismissive set of reassurances.

" I know you said the doctors don't think he'll ever be able to do it, but I know God will work you a miracle."

"He'll grow out of it. Don't worry."

"My friend has a friend with a child with the same diagnosis and she went on this special diet and now she's cured. I'll have her give you a call. Everything will be fine."

"He's just a boy. All boys take time to grow up."

I'd like to believe that the next development in this conversation is one of genuine support. An apology for making assumptions, judging, and minimizing the reality of your family's daily like and future. A reaching out for a true understanding of our unique situation. For some people in our lives (the best ones!) this is the next milestone. It is wonderful and I don't mind the process that it took to arrive. For most people, however, it's not the case--short on time, lack of opportunity, or, most likely, I don't always want to be the one putting on my advocacy/educator hat. Maybe next time this happens, I'll give them the link to this blog post, and let them know that they might want to do a little more reading on appropriate development and milestones--for themselves. :)